Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


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Camino

Camino pic

I’ve long been fascinated by the Camino de Santiago; a network of pilgrimage routes leading to the cathedral of Santiago de Compostela in North Western Spain. Known also as The Way, it’s a place where, according to tradition, the remains of Saint James the Great are buried. It’s a route that has become popular not only with pilgrims, but also hikers, cyclists and others looking to challenge themselves as well as looking for something else, something deeper. A pathway walkers often say they tread to find peace and a new sense of purpose to their lives. A restorative ramble in a remarkable landscape.

A highway to hope.

I would love, one day, to go on the Camino and experience if for myself, though given my less than enthusiastic approach to camping, hostelling or living without my home comforts, I’m not sure if I am really up for the challenge. Yet I am still drawn, not just to the beauty of the pathway itself, but to those who tread upon it. Countless lives that have walked that pathway for all kinds of personal reasons. Some religious, others not. Each story important and relevant, in some way, to all those who walk it. Why did they take that pathway when they could perhaps have found an easier way to relax and find inner peace?

I think the answer lies in the hope that they find along The Way. Hope that wells up as they experience its beauty, its ruggedness, its challenges. Hope freely given to them as they meet different people, from all walks of life, from many different countries. They may go there for all kinds of reasons of course; exercise, well being, a chance to experience a different culture. But hope. Hope is often what spurs them on.

Hope is often the overriding factor in most of life’s major decisions. It can be found at all life’s twists and turns. At crossroads in our lives we look for its signpost. As we enter new relationships, contemplate a marriage perhaps, start a family, or look for a new job, new home and so on we look for it, find it, and take it with us. We may pore over all the facts in our possession and weigh up the risks involved in making big decisions. But we almost always make our choices with a measure of hope that is just as important to us as what we already know.  Hope is vital. It is a pathway we must tread, though it may make us vulnerable.

Hope is the reason I write.

The pathway I now follow is not the one I was signposted to. Eight years ago, on discovering at my 12 week scan that the baby I was carrying might have Down’s syndrome or some other genetic condition, doctors pointed me in the direction of another pathway. Society also pointed to it and still does. They said I should follow the road that will get me out of here. One, they told me, would be the best for me, and for my unborn child. A pathway that would lead me to a place where I could simply try again. They saw no hope for this child, only suffering and misery, leading to death sooner rather than later. They looked only in one direction. No one told me about the other pathway, the one I am now on and which I had to find for myself. They didn’t give me a choice, though they claimed they were. This pathway isn’t easy, I’ll admit. Yet it is a pathway signposting hope. A pathway filled with many people from different walks of life. Some of those people saw it and chose it, others found themselves on it unexpectedly.

At times, the terrain is rugged, challenging and exhausting. It’s at these times you can quickly come across others on the path who know how to find a way through. People who can steady you as you climb over the stiles or tell you the best places to find help or rest. And though the ground beneath your feet may at times feel rocky and unstable, the view is breathtaking. The beauty to be found along The Way is what keeps you going. Always changing, always something new to marvel at, be thankful for and draw strength from.  For all the challenges it is still a pathway you are glad beyond words that you discovered.

For any woman and her partner who is being signposted in only one direction by doctors, or society or even their own personal prejudices (and I had lots of those, believe me) please know that there is another way. A crossroads has more than one sign. Step aside, look behind whoever or whatever is in front of the signpost and realise it also points in another direction.

It points to another Camino.

A highway of hope.

For lived experience of what it is like to bring up a child with Down’s syndrome check out these websites and meet others who have discovered hope in similar situations:

Positive About Down Syndrome

Wouldn’t Change A Thing

 

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Framed

Today is my birthday. It’s a big birthday.

Its ten years since my last big birthday. The biggest birthday I’ve ever had, though there was and is no zero on the end of it.

Ten years since I woke up in hospital, 29 weeks pregnant, surrounded by monitors and hooked up to machines. A nurse stationed at the foot of my bed. I’d spent a week in Intensive Care as doctors fought to save not just my life but that of my unborn baby. One by one, my major organs gradually shutting down. My husband told to expect the worst; doctors didn’t know if either of us could be saved. I was hours from death.

Ketoacidosis- a condition I’d never heard of, had crept up from nowhere. We had been enjoying our last holiday before the baby was due. Brixham; a pretty little fishing village on the Devon coast and a place I’ve not been able to revisit since, such are the painful memories it evokes. The holiday had to be cut short. It’s a condition that is fatal if not immediately treated, brought on by poorly managed or untreated diabetes. As I’d had no previous indications of diabetes in my pregnancy it was a mystery why I became so ill. So unusual, that doctors later asked my permission to write a medical paper on me for their journals.

I woke up and the doctor wished me happy birthday.

For ten years I’ve always considered it a terrible birthday. On my discharge from ICU, I was offered counselling- such was the potentially traumatising effect of a week in ICU.  I declined. I felt no need – I had survived and so had my unborn baby. I had something wonderful to look forward to and that was enough.  Over the years I’ve pondered on the experience more so. Only recently discovering, for example, that the weird hallucinations I had whilst there were as a result of the cocktail of drugs being pumped into me. Perhaps if I’d taken up their offer I would’ve known this.

It’s taken ten years for me to celebrate that birthday. May 7 2009 is the day I got given my life back. It’s the day I knew I was still going to be a mum.

It was the start of the next ten years.

Ten years that have brought much joy into my life as well as difficulty. Ten years that have brought formal diagnoses including Down’s syndrome, Dyspraxia, and recently Autism into my life through my children. Diagnoses that, at one time, would have filled me with fear but that have instead brought me into the most amazing community, and given me two unique children who, along with the challenges, bring me indescribable joy.

There is much talk in the Down’s syndrome community about changing the narrative around a diagnosis. A well-worn phrase that I wonder may be past its sell by date. Too clichéd perhaps; I’m not sure. Yet the desire behind it to see a story told differently is one I applaud. For so long, pregnant women have been told of the ‘risks’ of having a child with Down’s syndrome. These are well known and documented. A quick google search will (sadly) bring up all kinds of fear inducing scenarios for a new mum; many of them based on outdated and frankly incorrect information, using terminology long since thrown into Room 101 by those who know better.

A snapshot of my own experience in the last ten years shows there’s much to be done. Ten years ago doctors fought to save the life of my unborn baby at 29 weeks. A little over two years later and doctors and midwives in the same hospital were telling me I should consider aborting my second unborn child even up to birth if I wanted.

Why? All because of a possible extra chromosome and the fears surrounding it. One life worth preserving, the other disposable according to their rule book. Though I am thankful to the doctor who, after initially offering me this ‘way out’, apologised saying he wished he didn’t have to but that he had to ‘follow strict guidelines’. The stats bear him out. Over 90% of babies found prenatally to have Down’s syndrome in the UK are routinely aborted.

The story of Down’s syndrome played out in many hospitals and clinics is a story that needs to change because it’s not the whole story. Parents are given only a snapshot of what life is really like with an extra Chromosome. And that snapshot is often out of focus. Framed in such a way that obscures the joyful reality of loving a person with Down’s syndrome.

It’s not lost on me either, that my first child – the one doctors fought to save has since had more than her fair share of challenges; diagnoses of conditions we didn’t know she had in utero. Yet no one ever suggested terminating her life. This will change if the proponents of pre-natal testing get their way and more conditions are targeted in the womb. So much they will be able to tell you and yet so little.

Ten years ago I almost died. A horrible, dreadful experience.

Ten years ago I was given a chance to live.

Ten years ago the doctor stood beside my bed, a week after he said I might not live, and wished me happy birthday.

Ten years since he and other skilled professionals saved my life and that of my baby. Ten years since many people prayed for me. A few came to ICU and prayed over me.  Some are no longer here themselves. I’ll always remember my dear friend Vicky (whose birthday I shared) getting past the tight security that would only let family or clergy in. Vicky was not one to ever let protocol get in her way and she came to hold my hand, praying as I drifted in and out of delirium.  I don’t understand why she is no longer here and it hurts my heart, but I smile at that memory.

So I will reframe my birthday of ten years ago. I won’t change the story by wiping out the painful, difficult, anxious, terrifying parts. But I will celebrate all that was good and all that began that day. I will stop remembering it in mournful, self-pitying tones but rejoice in the new life it began.

I will look at the whole picture and put it in a new frame. Some stories are worth telling from a different perspective.

Happy Birthday to me.

Dedicated to Vicky Taylor.  

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Miss you Vic, happy birthday x

 


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Poetry in Motion

Butterfly poem

I’ve discovered a love for poetry in recent years. A passion awakened by hearing the late, extraordinary Mary Oliver read her poem Wild Geese’. An experience that had a profound effect on me at the time. Now, her words, hand painted, hang from my living room wall. Words that made me gasp and caused my heart to sing. Words that still do. The power of the spoken word, especially spoken by the one who crafted it,  is immense.

I’ve always imagined sharing these treasures with my children. And I’ve started to, with my eldest. I shared another poem, by the same author I worried’, with her recently. Her anxious face lit up as I read. Someone else knew how she felt. It gave her confidence. It affirmed her. She was not alone. She loves words too and is beginning to discover the sheer joy of poetry. Of words used well.

My youngest child, who has Down’s syndrome, is largely non verbal. She has very few, if any words. She may not yet have the words to say to us but our words matter hugely to her. And poetry is, it seems, a powerful form of expression for her too. The spoken word. Only the other day, I found her looking at the Ipad over her sister’s shoulder, as they watched Michael Rosen perform a poem he had written. She could not repeat a single word but was utterly captivated by his expression, his story telling and his passion for the subject – Chocolate Cake. He brought words to life and enabled her to share in his delight. Unlocking a subject she knew little about in a glorious way. There’s nothing quite like the joy of hearing a non verbal child laughing like a drain!

Words, or more importantly, how we use them have the power to unlock or close down.  As we approach another World Down Syndrome Day I see many people online spreading a message through their words and pictures of what life is really like to live with Down’s syndrome. Telling a story of hope, fulfillment and community. They do so for good reason.

All too often, the words offered to pregnant women and their partners when the subject of screening for Down’s syndrome comes up, are words that close down. Words that shut out possibilities. Words that paint a bleak picture. Words that may offer sympathy but that do not offer hope. There is no power in pity.

It’s time this changed. We know the reality. You see we have a passion for the subject. And we can tell these parents a different story. We can use words that can unlock their dreams and their hopes and their plans again. We have the words that can dispel the myths, whilst being able to acknowledge their fears; we were in their shoes once too. We have the words to give them confidence. The words to affirm them as parents who will be able to love and cherish their child regardless of an extra chromosome. We have the words to show them that their child is not going to be defined by a list of medical issues or learning disabilities. We can bring words to life. Real life. Their lives.

We want these parents to be given the opportunity to talk with or learn from families who are living lives that include Down’s syndrome. Living lives not of medical reference but of poetry that reflect the highs and the lows of bringing up a child with Down’s syndrome. We want to be able to unlock a subject they may know little about and invite them to discover for themselves the joy that is to be found in the life of a person with Down’s syndrome.

Poetry in motion. Lives well lived. 

Sadly, here in the U.K. there are no second chances for the 90 percent of babies who are detected as having Down’s syndrome in the womb. Their prospect of life is brought to an end. Discriminated against before they even draw breath.

We need to get this right. Words need to change and the voices of those who know must be heard – especially at that most critical time of screening and diagnosis in pregnancy.

Mary Oliver is famous for many words, but perhaps, most poignantly, she asked the question,

“What is it you plan to do with your one wild and precious life?”

It’s not the only question that deserves a careful answer.

 

For more information on Down’s syndrome from people who really know please check out these great resources:

Positive About Down Syndrome

Down’s Syndrome Research Foundation

Wouldn’t Change a Thing

Down’s Syndrome Association

Lose the Label

 


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Epiphany

I am a treasure seeker.

I love to be surrounded by beautiful things. Not necessarily expensive things – though I like them too. Just beautiful things. Recent treasures I’ve acquired are hanging in my redecorated living room; a picture of a woman gazing out of a window, a bird cage on the table behind her. Anything with a bird cage in it is beautiful to me, there’s something deeply enchanting about them. Then there’s my framed Frida Kahlo staring strikingly out from the chimney breast. These are my latest beautiful things.

My children love treasure seeking too. Over the years my eldest has kept an assortment of valued bits and pieces she has found or been given. A diverse and eclectic mix of fascinations. Conkers happily collected on the way home from school one day, actual fairy dust in a tiny bottle, confetti from a family wedding, bits of paper from friends with “bff” scrawled on them in childish form, usually under a hand drawn princess or something fluffy and adorable.

I remember the time, as a toddler, she literally held onto one particular treasure for days. Ignoring the vast array of toys she had successfully acquired my daughter chose, as her most favoured possession, an empty margarine tub. She carried the margarine tub with her wherever she went and at all times. Her limited language skills at that point meant I never found out why the tub found such favour in her eyes. Its worth was not apparent to me, to begin with, but her love for it was. The margarine tub became important to us all.

Her younger sister also finds treasures of her own. A discarded ribbon from an unwrapped gift will please her often more than the gift itself. A chiffon scarf that can be floated in the air will delight her if she discovers one lying around. And as for autumn leaves cascading down around her on a windy day; well that’s her idea of heaven. Heart singing moments for her and for those who care for her.

Treasure for the soul. Like balm.

Where your treasure is, there will your heart be also….a biblical truth which, whether you have a faith or not is hard to deny.

Most recently, my eldest acquired a new and precious treasure which she now keeps in a glass jar.  A fragment of Myrrh, another kind of balm, given to her as an Epiphany reminder by a man who has spent his life treasure hunting in the Middle East. Canon Andrew White, often referred to as the Vicar of Baghdad; a man who continually seeks out the good in those often vehemently opposed to each other, to bring reconciliation and facilitate peace where only conflict exists. A man who knows where real treasure is to be found. Found among people the world often dismisses, often fears, and often shuns.

My wealth has increased beyond measure since my daughter was born with an extra chromosome seven years ago. My Epiphany.

Hazel has Down’s syndrome. A condition, a group of people, so easily disregarded, yet who, before they are even born, are sought out more aggressively than ever through modern screening methods. Feared and shunned by a society that cannot see the treasure that is within.

Society…they are the ones whose pockets are empty. They have not found this treasure.

My pockets are full and so is my heart.

hazel with grass

#dontscreenusout


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The Ripple Effect

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The Ripple Effect

A letter to my daughter.

I’m sitting by the side of a lake; our home for a few, blissful July days. A pair of herons make their graceful ascent from the water, up, over the trees and out of sight. Willows stoop to meet their reflections. An abundance of Water Boatmen paddle effortlessly across the surface, making walking on water look like the most natural thing in the world.

Carp (at least I think that’s what they are…I’m no fisherman) occasionally leap out of the water making me jump (are they meant to do that?!). Disturbing the peace yet also bringing it.

The water ripples. Concentric circles reaching far and wide. Their effect is mesmerising. Tranquility resonating across the lake to each bank. Practical too; the ripples help ensure that this particular man-made lake does not become stagnant.

It’s almost 7 years since you disturbed my peaceful life. I had it all in order.
Capability Brown had expertly landscaped my dreams. My home, my family, my life.
Everything was coming up roses and all my ducks were happily in a row.

Then you arrived, with your extra chromosome.

In a flash. Like that carp leaping out of the water.

I was not prepared. My peace was disturbed. My calm, tranquil, ordered life disappeared. Or so I thought.

I saw you there, suddenly in the centre of everything. Thrashing around, fighting for breath, fighting for your very life in those first few, terrifying weeks.

A shocking moment. One that lasted much longer than it should have, I am ashamed to say. I questioned whether you should be here at all. Was this in the design?

Didn’t you take the test?” I was asked on more than one occasion. A mixture of pity and disbelief on the faces of those who asked this most insensitive of questions.

Yet nothing could have prepared me for what was to come. There is no test for that.

The ripples.

The far reaching, calming and breathtakingly beautiful ripples of your very existence.

Nothing prepared me for the joy you would bring to our lives and the lives of countless others whom you meet. The laughter you bring. The smiles you so freely give.

Nothing prepared me for the restorative air you would help me learn to breathe. Deep, satisfying, life giving oxygen. I could go to the finest health resort in Switzerland and still not breathe air of such quality.

Nothing would prepare me for the tranquility that surrounds you.
A tranquility that has nothing whatsoever to do with noise or indeed the lack of it.
How could it? You are so noisy and your life is filled with chaos! Even as I write, the natural tranquility of just being by a beautiful lake has been brutally broken. Broken by the need to perform an emergency feeding tube change on you. Yours has broken. It keeps you alive as you cannot yet eat.

My heart is racing, my hands shaking. Life is fragile and yours particularly so.

No. The tranquility that surrounds you, that you carry, is to be found by seeing the world through your eyes.

You already knew about ripples. You were born to understand their power, their beauty.
Your intelligence is unintelligible to some people. Dawkins and his like couldn’t begin to understand. They are still merely gasping for air.

I notice there are bulrushes on this lake. I’m reminded of another baby. One that in biblical times, was hidden by its heartbroken mother in a basket and placed among some bulrushes. Someone wanted that baby, along with many others, dead.

There are those who think you should not be alive. They’ve even developed a way to help detect your extra chromosome long before you are born. A test, they say, that will tell a mother all she needs to know so that you or people like you need not be born at all.

They see the disturbance, but they do not see the ripples. They have no test for them. No test for joy. No test for all that makes up a person’s life. The test they have is deficient.

And I am forever in your debt for disturbing my world and bringing me great tranquility.

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Just one of three beautiful lakes at South View Lodges, South Devon

 

 

 


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Windmills and Bicycles

I love the Chelsea Flower Show. Glorious, decadent, sometimes ridiculous, but always sumptuous. A televisual feast that I dine out on each May. A week long explosion of colour in my living room (I’ve yet to actually go there). Designers clamouring for hard won awards from the judges. A label to be proudly displayed for all to see, opening doors to further fame and success.

Inspired by this sublime, horticultural festival I annually turn my attention to my own patch of ground or ‘garden’ as it’s rather hopefully known. I imagine how I will transform it into my own haven of tranquility; one with an edgy, urban, free flowing design, softened by wispy aromatic planting and ethereal water features. Award winning. Gold Standard or at least a Silver Gilt.

But not today.

Today the paddling pool is out. A large blue inflatable bath sits slap bang in the middle of the lawn. Well, perhaps lawn is a little optimistic. But there’s definitely grass, of varying lengths. Quite a few patches of the stuff in fact.

There is a border…of sorts. Hardly wispy though. More weighty. Overgrown even. A tree or two. A couple of swings, a small trampoline and a shed.

Oh. And a windmill.

A bright, colourful and very large plastic windmill.

You see, the garden of my dreams is not the garden of my reality.  The garden I envisaged is not a bit like the one I actually have. A different reality.  Not how I imagined.  A bit rough around the edges in places. Needs maintenance.

The garden I have is magical.

Yesterday, she made the windmill spin. My daughter has never done that before. The windmill I purchased on a whim from a cheap and cheerful retail outlet just the other day.

She’ll enjoy looking at that.

But she did more than look at it. She made it spin. She actually made the windmill turn. Over and over again. An action that most children would learn to do in a heartbeat has taken her years to accomplish. It does not matter. She did it. And she loved it.

Our garden is a safe place for a child with Down’s syndrome.  A place for her to be. To feel, to smell, to touch, to taste, to explore. Our garden is her space. A safe space. A nurturing space. A joyful space.

It’s also a place where her older sister can be herself. It’s where she can, if she chooses, practice riding a bike – away from the quizzical looks of others. She has yet to be able to ride a bike properly. Dyspraxia – a life-long developmental condition – has recently been added to the list of our own awards. Another formal label now appears at the top of the endless stream of hospital letters that we receive; I’m not complaining – labels can help open doors to a different kind of success. Dyspraxia makes the things that most children take for granted so much harder for her. Climbing, swimming, running, jumping, riding a bike or a scooter – they are all typically huge challenges for a person with Dyspraxia. It also brings with it a host of daily sensory challenges and stresses.

Our garden is her safe place too.

We are soon to have some long overdue landscaping done. Some order is most definitely needed, I have to admit.  A patio would be nice.

Chelsea is glorious. Perfection. But in many ways it’s an illusion. Temporary. Taken down once the cameras have been switched off.  For most people, their gardens are not like that. And, as much as I love Chelsea, I am sad at how it leaves me feeling when it’s over. As though my garden isn’t good enough. Defective. Less than.

Our garden is not a Chelsea garden. Yet, despite perceived flaws in its design it brings great beauty and depth to our lives. Sometimes chaotic, sometimes peaceful. It is an ever changing landscape that challenges me and captivates me at the same time. It is a tough but beautiful place to be. I want no other garden.

I think Chelsea is perhaps selling fake flowers. Artificial.

Someone told me once that I could aim for perfection with my unborn child. By not having her. By ending her life before she was born and trying again for a better one. A gold standard, award winning one.  I like gold, I really do.

But I prefer windmills.

Hazel and windmill

 

 


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Wait for me

Wait for me…

I’ve never been very good at waiting. As a child, if you gave me a Christmas or birthday present before the big day, I’d be itching to know what was inside. Prodding and poking it until I’d eventually worked out exactly what was concealed. I couldn’t wait.

It was the same when pregnant with both my children. Boy or girl, I wanted to know. I didn’t need to know, I just wanted to. For no other reason than my curiosity got the better of me. I admire couples who choose not to know the gender of their unborn baby. They have a level of self-control that evades me totally.

But having had two children, both with additional needs, I have had to learn, really learn what it is to wait.

“Wait for me” is a phrase often heard in our family. My eldest child M, recently formally diagnosed with another condition – Dyspraxia (DCD), uses this phrase the most. With good reason.

You see, for her, a simple walk with family or friends means twice the effort.

What most of us able bodied do with relative ease is more challenging for her. It’s easy to overlook the work she has to put in to keep up the pace.

So she reminds us.

Wait for me.

Her friends and peers are supportive, but sometimes they, quite understandably and naturally forget; running on ahead in their excitement. Leaving her behind.

Wait for me.

Just the other weekend, we found ourselves staying in the beautiful Welsh/English border countryside with friends.

Outdoors obviously called for some exploration.  Not the easiest of terrain for anyone with mobility issues! So, to see her very close (and particularly agile) friend hold back and help her negotiate a steep grassy slope, hand in hand, made my heart sing.

The friend waited.

She didn’t have to of course. No one would have blamed her for running on ahead, doing exactly what children do.

The friend valued my daughter and was prepared to put her own agenda to one side.

Valuing each other is something increasingly missing in our society. Really valuing each other I mean.

Putting the other person ahead of ourselves. Seeing their worth and valuing them for who they are, however different they may appear. Going at their pace, looking for ways to help them move forward; however much that may slow us down. Not leaving them isolated or abandoned.

The friend made a choice to value. That choice made all the difference; to my daughter, and to me.

Nearly seven years ago, when doctors told me my unborn baby might have Down’s syndrome or another  condition, I chose to wait. I chose not to have invasive tests that would tell me for certain if that was the case. It wasn’t easy to wait. I won’t lie – part of the reason for not wanting to know was that I was in denial about even the possibility of having a child with Down’s syndrome. Part of me hoped that it was all a mistake and everything would be “fine” in the end.

Wait for me.

Hazel, my youngest, is now six and a half years old. She loves life and most of all she loves and values people. People like you and me.  People.

I waited for her.

She arrived and our lives were undoubtedly turned upside for a while.

She patiently waited for me to come to terms with her extra chromosome.

I am eternally glad I waited for her.

Waiting for her has taught me more than anything about the priceless value of human lives. … hers, mine, yours, theirs.

I hope that women really do get a choice when it comes to the new prenatal screening tests (NIPT) being introduced across the NHS. I hope that choice actively includes supporting women choosing NOT to screen if they really don’t want to. Supporting them instead to wait. Supporting their choice, instead of pressuring them to ‘choose’ termination. There are far too many real life examples of the latter happening to women.  I know, I was one of them. That’s not choice.  There is another. And it’s a choice well worth making, I am certain of that.

There is real value in choosing to wait.

Wait for me.

#equallyvalued

#dontscreenusout